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Overcoming Barriers to Cancer Care for LGBT Patients

NEW YORK—While a number of barriers to cancer care exist for lesbian, gay, bisexual, and transsexual (LGBT) patients, cultural competency demonstrated through medical center programs, improved provider sensitivity, and changes in government health policies may help to combat health disparities. That was the conclusion of speakers here at a meeting on the topic held at Memorial Sloan-Kettering Cancer Center in January.

Screening Barriers

Misconceptions about LGBT status and the need for cancer screening may hinder cancer care, said Shane Snowdon, MA, Director of the LGBT Health & Aging Program at the Human Rights Campaign Foundation.

“Transgender people and their providers may not realize that screening is needed for ‘birth gender cancers’—for example, if you transition from male to female and you retain your prostate, you need a PSA.” In addition, health care providers may not recognize the need for cervical Pap smears in lesbian patients, and they may not know the indications for anal Pap smears in men who have sex with men.

Fortunately, resources are available to improve screening of LGBT individuals, she said. For example, the National LGBT Cancer Network (cancer-network.org) publishes a list of LGBT-friendly screening facilities and offers cultural competence training in healthcare.

Distrust of Providers

Another barrier to care, Snowdon continued, is the lack of trust LGBT patients may have with their providers. For example, she pointed to a national survey by the organization Lamba Legal of approximately 5,000 LGBT individuals showing that 9.1 percent of lesbian, gay, or bisexual people thought they were going to be refused health care because of their sexual orientation (lambdalegal.org/publications/when-health-care-isnt-caring). Nearly 52 percent of transgender people thought they would be refused care, as did 20 percent of individuals living with HIV. Additionally, 28.5 percent of lesbian, gay, and bisexual individuals, 73 percent of transgender respondents, and 35.5 percent of HIV positive people thought medical personnel would treat them differently.

The fears illustrated in this survey may play out in the clinic with delay and avoidance of cancer care, and even once in the cancer care system, LGBT people deal with much higher levels of stress, which can make absorbing the vast amount of information that comes with a cancer diagnosis and treatment more difficult.

She also noted that whether patients are out or not, they worry about maintaining secrecy by watching what they say and hiding or eliminating public displays of affection, especially older generations. If patients come out to their primary care provider, they often have to wonder whether this information has been recorded or relayed to their oncology care team or whether they have to repeatedly disclose their LGBT status.

Visitation Concerns

LGBT patients may also worry about whether their partners and friends will be able to visit them in the health care facility. Patients with same-sex partners also wonder whether their medical directives will be treated as seriously as those between a husband and wife, Snowdon said.

Both the Joint Commission and the Centers for Medicare and Medicaid Services (CMS) state that patients with same-sex partners must be given equal visitations rights. Moreover, every single accredited health facility must include protection for LGBT patients in its nondiscrimination policy. CMS has also clarified that same-sex partners have the same rights as heterosexual couples to name a representative who can make medical decisions on behalf of the patient.

The Affordable Care Act (ACA) also applies protections for nondiscrimination established in existing civil rights laws to the health care system, said Kellan Baker, MPH, MA, Associate Director of the Center for American Progress in Washington, D.C. Of particular note, ACA Section 1557 provides protections from discrimination in any federally funded health facility on the basis of gender identity and sex stereotyping.

Limited Social Support

Another common concern of LGBT cancer patients is finding social support, Snowdon said. Many LGBT people, especially those aged 55 and older, have fewer children and weaker family ties. Other caregivers might be in short supply due to the impact of HIV on the older MSM (men sleeping with men) community and transgender people.

LGBT individuals are also less likely to use religion-based support systems and may worry about accessing well-known cancer organizations for services because of a perception that they are not inclusive of the LGBT community. Additionally, patient navigators, advocates, home health care service providers, and social workers may be uninformed or uncomfortable with LGBT cancer needs.

Implementing LGBT Programs

LGBT initiatives to help combat some of the common barriers to care, while well intentioned, can become invisible within a hospital bureaucracy, said Barbara E Warren, PsyD, LMHC, Director of LGBT Health Services at Beth Israel Medical Center, Mount Sinai Health System.

However, the Healthcare Equality Index (http://bit.ly/1fGcVCi) can act as a guide to investing in LGBT care. She also pointed to the Joint Commission's 2011 field guide on implementing culturally competent care for the LGBT community as being helpful as a good blueprint for implementing programs (jointcommission.org/lgbt).

At Beth Israel Medical Center, Warren developed a LGBT work plan to address policies such as nondiscrimination and visitation rights, assisted care, medical decision-making, employer policies, and domestic partner benefits. A referral program for LGBT-friendly patients services and support was also established, as were initiatives in community engagement and research and development.

Provider Sensitivity

Health care providers can also help LGBT patients access quality care by recognizing how they self-identify, said Nathan Levitt, RN, Community Outreach and Education RN for the Callen-Lorde Community Health Center and an oncology nurse at Maimonides Medical Center in New York. “If you want to provide the best health care for people and improve outcomes, you want to call them by the right pronoun, the right name, the right identity,” he said.

Health care providers should never make assumptions about someone's identity, he said. Either wait until patients self-identify or sensitively ask them how they self-identify. Using the right identifiers helps ensure LGBT individuals feel respected, improves communication, and contributes to patient retention.

Providers also need to consider patients' gender expression and identity, which may be different from what sex they were assigned at birth based on anatomical appearance, and providers should also remember that gender identity is separate from sexual orientation.

Financial Obstacles

Financial difficulties are also one of the leading barriers to obtaining good cancer care for LGBT people, Snowdon said. Lesbian, gay, and bisexual people are more likely to live in poverty than their heterosexual counterparts, according to data from UCLA's Williams Institute.

The National Transgender Discrimination Survey (thetaskforce.org/reports_and_research/ntds) showed that transgender people are four times more likely to have an annual household income of less than $10,000 and twice as likely to be unemployed compared with the general population. In addition, the Center for American Progress commissioned a survey in 2013 of LGBT people with incomes under 400 percent of the poverty level and found that approximately one third of respondents were uninsured, Baker noted.

“This is a huge number and more than twice than what it is in the general population.” Among respondents with insurance, 43 percent had coverage through their employer, compared with approximately 60 percent among the general population.

Even in 2014, most employers still do not provide insurance coverage for same sex partners, Snowdon said. Even when same-sex partner coverage is available, some LGBT people don't access it because they are not comfortable coming out. Additionally, some LGBT individuals may not be able to afford the taxation of domestic partner health benefits, she said.

Once insured, transgender patients may have to contend with outright rejections of claims, she continued. Health conditions may be coded as being related to a person's transgender status due to use of hormone therapy, and most insurance policies do not cover a procedure or diagnosis related to transexualism.

In people who have undergone chest surgery as part of their transition from female to male, obtaining a mammography for remaining breast tissue may be a challenge if they are coded as a male in the insurance system, she said.

Coverage through the ACA

The ACA offers new options for health insurance coverage, which can help address disparities in the LGBT community, Baker said. State governments can opt to extend their Medicaid program to provide coverage for individuals under a specified income level, and most states now have a have a health insurance marketplace through which people can purchase coverage with financial assistance, making premiums more affordable.

Health insurance marketplaces are explicitly not allowed to discriminate on the basis of sexual orientation, gender identity, diagnosis, or health condition, and this also applies to insurance plans offering essential health benefits, he said.

Also of note to cancer patients, preexisting conditions can no longer be used to deny coverage, he added. Moreover, there are no annual and lifetime limits on coverage, and underwriting is not allowed. Insurance coverage is also required for people participating in clinical trials.

Snowdon also cited Out2enroll.org as a resource for LGBT people who are interested in their eligibility for obtaining insurance through the ACA—especially valuable to transgender patients for determining whether a plan has any potential exclusions that might impact care, she said.

Data Collection

Another way the ACA is addressing LGBT disparities is by allowing national data collection on sexual orientation and gender identity.

For example, Baker said, the 2011 LGBT Data Progression Plan commits the Department of Health and Human Services to developing sexual orientation and gender identity questions and adding them to all the HHS major health surveys.

The CDC's meaningful use program is also considering whether to collect sexual orientation and gender identity information through electronic health records.

Identifying as LGBT in patient health care records would be step toward better care, Snowdon said. “I understand as researchers and policymakers why we want that information, but health care providers need to ask LGBT patients what the best approach is to asking about self-identity.”

A recent Center for American Progress study of LGBT and heterosexual patients in four different community health centers found that more than 75 percent of respondents would be willing to answer questions about sexual orientation and gender, Baker said. “They recognize the issue as being important.”

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